The history of AIDS, and the human immunodeficiency virus that causes it, has left a long and bloody mark on world history, moving from an academic concern, to an always-fatal but poorly understood disease, to an inflection point in civil rights, to what is now, in much of the world, a survivable chronic condition. It has been an instrument of death and division which has cost perhaps 35 million lives.
HIV was a zoonotic disease transmitted to humans from apes, mutated from the related simian immunodeficiency virus. While the nature of its first transfer to humans remains a point of debate, it spread rapidly via unsterilized injections (commonplace in most of the regions of Africa where infected apes were known) and sexual activity, eventually migrating around the world with infected travelers. There were handfuls of confusing cases throughout in the world in the 50s, 60s, and 70s, rarely connected with each other or seen as part of an epidemic. The earliest reported American fatality due to AIDS may have been teenager Robert Rayford in 1969, although this was not known until decades later – at the time, his case confounded doctors.
HIV/AIDS first became news in 1981, when the Centers for Disease Control had tentatively identified the new disease as a type of pneumonia that inexplicably attacked healthy people. The next year, the New York Times ran one of the first stories documenting the disease, referring to it as ‘gay-related immune deficiency’ (GRID). Early on, the terminology of ‘human immunodeficiency virus’ and ‘acquired immunodeficiency syndrome’ had not been formalized, and a variety of other terms and diagnoses, such as Kaposi’s sarcoma,‘acquired immunodeficiency disease’ (AID), and ‘lymphadenopathy-associated virus’ (LAV) were used. In searching period writings, it’s best to use a variety of these synonyms when looking for resources from the early 80s and before.
After it was formally identified, HIV/AIDS was still poorly understood, and even when doctors had identified facts about it – for example, that it could transmit through semen, but was absent in urine – the general public absorbed this information more slowly. Since the earliest known cases involved homosexual men in some way (as evidenced by euphemisms like GRID) – from patients like Bobbi Campbell to activists like Larry Kramer – the lay population dismissed it as a ‘gay disease’ long after it became evident to doctors that it also could infect heterosexuals. Even after widely reported cases like Ryan White (diagnosed 1984) and basketball player Magic Johnson (diagnosed 1991) came to public attention, misconceptions remained rife, such as the fear that HIV could be contracted by sharing food or via a toilet seat (in actuality, the virus does not survive outside of living body fluids, like blood or semen) – errors which unfortunately, have not been completely overcome today. These unfounded fears contributed to patients with HIV/AIDS being treated as pariahs, even though they managed to reduce the stigma of the disease as a ‘cosmic punishment’ for homosexuality somewhat.
Governmental response to HIV/AIDS was also slow. Famously, Kramer (founder of the Gay Men’s Health Crisis and ACT UP) feuded with New York mayor Ed Koch and National Institute of Allergy and Infectious Diseases director Anthony Fauci over their apathy for people suffering with HIV, particularly vulnerable people and minorities. Azidothymidine (AZT), the first antiretroviral medication for HIV, became available in 1987, but it was widely seen as ineffective, with many other promising drugs untested (despite strong anecdotal evidence for their value from the LGBT community). Although relationships would improve eventually (including Kramer’s and Fauci’s), the 80s and early 90s were marked by resentment and alienation.
Eventually, treatment options began to improve, and the stigma of HIV/AIDS was lessened somewhat. Oral HIV tests arrived in 1994, and in 1995, highly active antiretroviral therapy (HAART) was developed, which reduced the viral load to manageable and even non-transmissible levels. Still, drugs remained unaffordable to many patients. In 2001, cheaper generic versions of HIV HAART medications were approved for export to developing countries, and this had the eventual effect of reducing prices for other HIV medications in the United States. And as the FDA approved more treatment options, more became covered by patients’ insurance programs. Drugs have continued to improve, including prevention options in addition to therapeutics – in 2012, pre-exposure prophylaxis (PrEP) received FDA approval, which protects HIV-negative people from getting the disease. While still facing a long journey to a true cure and eliminating the remaining stigma surrounding HIV/AIDS, it has become a survivable chronic condition and not a death sentence.
The library also has numerous sources. In addition to those linked above, books like Human Rights and Public Health in the AIDS Pandemic by Lawrence O. Gostin, Global HIV/AIDS Politics, Policy, and Activism: Persistent Challenges and Emerging Issues by Raymond A. Smith, and Public financing and delivery of HIV/AIDS care: securing the legacy of Ryan White by the Committee on the Public Financing and Delivery of HIV Care explore various facets of the history of the crisis, and others like The origins of AIDS by Jacques Pepin or HIV/AIDS in the Post-HAART Era: Manifestations, Treatment, Epidemiology by John Hall focus on particular time periods of HIV/AIDS history.
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